Live with Purpose - November 2, 2020

Dementia Caregiving During the Pandemic

by Liz Pomerleau

As we recognize National Family Caregivers Month, it’s especially important to recognize those who are caring for loved ones with dementia. If you live with someone who has dementia, the pandemic has likely made for a challenging time in your household.

Many caregivers find it difficult to feel connected with their loved one as the disease of dementia progresses, and the anxiety and isolation of the COVID-19 crisis looms large. But there are some practical, accessible models for helping caregivers connect with their loved one with dementia.

In my role as director of the Goodwin Living Clinical Pastoral Education program, I'm always gathering resources that I find useful in my own pastoral work and in educating our students in theirs. In this post, I will outline suggestions from two authors who give practical advice about how to invest in a loving relationship with individuals who have dementia.

Care For Yourself First

We must acknowledge that self-care is the first step towards reinvesting in a relationship with your loved one. Grief is unrelenting in the dementia journey. Your loved one can no longer play the role they once did in your life. They cannot be your spouse or your parent or your friend the way they used to be. This absence leads to deep sadness and loneliness. Caregivers must find and nurture resources within and around themselves to sustain caregiving. Inner resources may include solitude, a walk in nature, prayer time, journaling, meditation, a quiet cup of tea, or other activities that help you feel connected with yourself. Outer resources may be friends, family, support groups, faith communities, or other activities that help you feel connected to the larger world.

Often, the hardest part of caregiving is simply finding the time to care for oneself. It is a blessing that a caregiver retains the mental ability to invest in their relationship with their loved one, but in order to be successful, we must first care for ourselves.

Helping Loved Ones Tell Their Story

Naomi Feil, author of The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s and Other Dementias, is a social worker who specializes in caring for people in all stages of the dementia journey. She purports that everyone in the last few decades of life shares a similar purpose: to live in such a way that allows us to die in peace. People with dementia have the same need, and their actions and words have purpose. They are trying to express long held pain and suffering in order to allow them to let go of their emotional burdens and die in peace. Caregivers can help them to do this work. Feil believes that relationships themselves are healing. Caregivers can stay in relationship with their loved one, and try to help them tell their story and express the emotion they are burdened with.

How caregivers can help with this process looks different in different stages of dementia. In early stages, we can help our loved ones to tell their story. Ask vivid questions, listen carefully and help them put emotional language around their stories. It is not important whether the story is true, but instead that it is expressed fully.

In later stages of the disease, caregivers can use gentle touch such as hand massages, back rubs or simply sitting together and holding their hand or arm.

Storytelling is another wonderful way to help remind your loved one of the life they’ve lived. This time, the caregiver becomes the storyteller, reminding your loved one of the accomplishments of which they are most proud, and the people whom they love.

Lastly, music is a wonderful resource. Throughout all stages of dementia, music can connect with parts of the brain that are often vividly alive within your loved one.

The Five Love Languages

Lastly, I’d like to introduce you to The Five Love Languages by Gary Chapman. His theory suggests that each one of us has a preferred love language, a way in which we easily recognize and can receive love from others. Those love languages are:

1. Words of Affirmation
2. Quality Time
3. Receiving Gifts
4. Acts of Service
5. Physical Touch

Gary Chapman also wrote Keeping Love Alive as Memories Fade (co-authored by Debbie Bar and Edward Shaw), which highlights how caregivers can tap into the five love languages at every stage of dementia. Caregivers can weave acts of love into the daily routine of life that will help your loved one feel appreciated and connected. For example, if your loved one lights up when she receives a gift, you could pick flowers and have an activity of arranging them together. If your love one thrives on acts of service, you could find a way for him to do a favor for you.

There are endless creative ideas on how to incorporate loving encounters into daily live that will help them to feel loved. And as all caregivers know, when your loved one is happy, life is much happier for everyone.

I hope you have found these ideas on how to stay connected in a loving way to be helpful. The dementia journey is difficult and sad, but it does not have to be barren of love and connection.

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Elizabeth (Liz) Pomerleau is a chaplain and ACPE Educator. She is the Director of Clinical Pastoral Education at Goodwin Living, Inc. and is a Board Certified Chaplain through the Association of Professional Chaplains. She has been working in spiritual care since 2010 and is passionate about interfaith community and learning from and with people of all and no faiths. Liz is a wife to Dan Pomerleau, and they are the lucky parents of Lucia, who was born in 2018. Liz and her family are care-givers for her mother-in-law, Diane, who was diagnosed with Early Onset Alzheimer’s Disease over a decade ago. Diane teaches Liz that rich, meaningful relationship is possible through every stage of dementia. Liz believes that people with dementia teach us how to stay connected with emotions and the heart – the essentials of pastoral care – if we can slow down to discover this gift.